Figured out the cause of my migraine….. I had been thinking since the gum was aspartame free when I bought the first packs at the start of last summer, that they hadn’t changed the ingredients in just a couple short months……. guess what….. they did. 😦 So my gum chewing is at fault. 😦 I HATE aspartame!

At too high a cost, but Still!!!!!

Yes, I have a migraine… as soon as the meds I took to knock myself out again take effect I will be going back to bed.

So… migraine super powers – super hearing and super sight…. I can hear things I normally can’t…. and….. I can see in the (mostly) dark a lot better than normal…….

I’d trade my newly found super powers to be free of this migraine though. 😦

So Johnny’s ex emailed with me the other day about the baby, and she told me she was praying for me and Littlest…. I like that for a nickname, so I’m now using it.

I’ve had a nasty migraine today. I woke up a couple hours after Johnny woke up and was at my computer for a couple minutes when nasty left side head pain started in my temple. I’m blaming hormones and the fact I’ve been eating lots of chocolate ice cream (certain chocolates seem to be triggers, and I never know which ones, though I avoid the ones I’ve already learned from the past), possibly my lupus as well, though other than the “fatigue” which is complicating my pregnancy tiredness it seems to be mostly back under control (Thankfully!!!!)…. so who knows. Either way my head hurts if I sit up for long, but I can’t sleep anymore (I’m getting bored and restless) so I’m watching stuff on Netflix while I lay curled up on the couch. I’m currently sitting at my computer while I drink a ginger soda to settle my tummy again, so I’m blogging and chatting with a friend.

My drink is almost gone and Mischief is sitting by my feet looking like I should move back to the couch, so I think I’m going to take his hints and I’ll try to post more again soon.

My bladder infection seems to be slowly getting better, I’m over halfway through the antibiotics now. I have plans to do a post about UTIs, IC and pregnancy… since it’s a muddled mess and involved in why I didn’t catch the UTI sooner (besides the fact I believe it to have partially been a med reaction).

My migraine is gone but I’m still having headaches… of course with all the crap in the air from the wind, and the pressure stuff that happens with these storms it’s not surprise that I’m having headaches.

My rash has cleared up, but I’m still having skin issues in that it did a lot of damage and drying to the skin, not just where the rash ended up, but the whole area around it, so I’ve been peeling some, itching a lot, and thinking I need to use some lotion on the area so that the skin gets moisturized again and the stuff that is dead will come off and the rest will hopefully go back to normal… that whole area feels REALLY odd right now. 😦

My lupus is back out of control…. I had a bit with this pregnancy where it was “in remission” I suppose would be the way to put it… I had a couple days where I was in pain, then I went on bedrest for the pregnancy and although I ached because our couch is uncomfortable and the way I use the mouse doesn’t help my shoulder out, I was not having lupus pain. I had a couple days after bedrest when I was still feeling pretty good, then about a week ago when the UTI really hit and I started really having signs of a reaction to the progesterone suppositories I ended up really ill again…. the dizzy spells are expected with pregnancy, as is the fatigue… the joint pain, the achiness, the migraines and the general feeling like crap… not so much.

The lupus stuff has sent my emotions spiralling even more out of control. I’m still all over the place (and with hormones and what has happened with my other pregnancies is it any wonder?), but adding the lupus pain back in when it looked like I might finally have a break from most of my pain other than some achiness and the normal pregnancy stuff has sent me into a bad place emotionally. With the pain rolling back in all the darkness did too… I had been so hopeful, but the pain, the med reactions and the UTI all happened close together and really is making it difficult to be in a good mood. I’m still excited about the pregnancy, and still hopeful it’ll work since I’m further than I have made it before, but I’m also really down about everything else. I never expected pregnancy to be easy… nothing else relating to my body is, but I still hoped that maybe I could get a bit of a break. And I hadn’t really thought it would happen until I got that time where everything was calm, I now feel as if things have been stolen back away from me, and it has really put a damper on things. Right now I’m just really hoping the ultrasound on Thursday goes well… I don’t think I could handle bad news there on top of everything else going on. I mean, I know I could, I know I’ll make it through, but I’ve had enough going on this pregnancy that I could really use some good news.

I have posts bouncing around in my head, but for the past 12 hours or so I’ve been riding the migraine train again. I’ll be back eventually. I blame (yet again) the progesterone… when I’d been doing it as suppositories I had some reactions, but they were all localized…. having it back in my bloodstream and going all over I’m feeling like I did on the low estrogen birth control – everything is ok except that I’ve got incapacitating migraines. Planning to nap now that I’ve taken meds, then call my ob’s office when I’m hopefully able to tolerate sound a bit better.

My migraines have been gone again, hopefully the next one will wait until after I have my appointments in the morning (disability stuff).
My lupus is… active (like usual) but not as bad as sometimes, which is amazing considering the storm coming in.
My endometriosis however…. it’s nasty. Each time I’ve miscarried it has gotten worse. Note: I do not know if this is actually endo, or another form of scar tissue that the miscarriages are causing, but I doubt that I’m getting scar tissue from the miscarriages outside my uterus, and I’m guessing from the pain that it’s both. My endo related pain (spots I’ve had it removed from before) is definitely worse… but my uterus is hurting more too. I’ve been pretty much stuck in bed or on the couch, and I’ve woken up crying a few times in the last couple of days due to the pain. I have no idea how Johnny is able to sleep in the same bed as me because I start making noise and writhing around when the pain gets too bad. I’m also having more and more bowel issues. :/ This is not a good sign since I do have endo that attacks my intestines. As I described it to Johnny the other night it feels like someone stuck barbed wire into my rectum, it poked through and is wrapped around organs and going through organs at an angle from the middle of my body up to just under my bottom left rib. It’s really uncomfortable, I have to be on pillows if I’m sitting (not that this is unusual, my hips are really bony), I have to be careful how I’m laying, I have to be careful what clothes I’m wearing (for both my pelvic region and my rectal pain), I have to be careful to keep from having anything touch my rear, as any pressure on it causes the pain to rear it’s ugly head. And if any one spot that feels like it’s got barbed wire in and/or around it gets pressure put on it, I’m running to the bathroom (even if there is nothing in me to run to the bathroom for) or nearly screaming from the pain… and all of the areas that are affected by that pain start hurting quickly, not just the one that has the pressure on it. This all has me pretty scared, because although the individual pain is not quite as bad as before my last laparoscopy, my overall pain is some of the worst I’ve ever had … I’d rather have the pain of my miscarriages again, surgery recovery is less painful, cysts bursting are about all I can think of painwise that compare…. I’m hoping this is just a cyst, but I have a pretty good guess that it isn’t. And I just want it over with. If I thought I could get a lap done with no money ahead of time, I’d be on my hands and knees begging in front of anyone I thought would be able to do even a tiny amount of help here. And I wonder what stage my endo is going to be at when I have my next surgery, since I was barely not stage two the last time, and I’m not far from there now, and it’ll be awhile before I can have another surgery. So I worry how much more damage and growth they are going to find when it’s that time again. 😦 I’m nowhere near my period, but I feel like I should be (and then some) with the pain I’m having…. I’m past ovulation, but not yet at my period and the pain keeps getting worse…. and I’m not exactly regular with my periods… it can be anywhere from 14 days between periods to 30 or so (the longest I’ve gone between periods since 2008 without being on continuous birth control has been 36, and I was pregnant). So I have no idea what to expect, besides the fact I’m on day 18 since I started bleeding with the miscarriage …. and like I said, it could still be at least another 10 days… and I thing it probably will be somewhere around that length. I really hope I’m wrong!

It has been since the 12th that I last wrote in my food/migraine diary about having a migraine. That’s the day I took the Excedrin Migraine and stopped it in it’s tracks. I had starting signs for one on the 17th, but after more rest it went back away. Today I have one again. I got really nauseated last night (couldn’t even finish my sandwich) and took an anti-nausea pill, slept from a bit after 3am until sometime around 7:30 am, at which point I woke up starving, had some breakfast, went back to sleep until 10:45 am or so when our neighbor who loves playing music (with LOADS of bass) very loudly woke me up, at which point I realized I had a migraine going. Two hours later the pain is manageable and more like a normal headache (though I’m sure if I don’t keep pain meds in me it’ll be a migraine again), with the help of most of a can of coca cola (yay caffeine…. ugh) and one half of one of my prescription pain pills. I have been keeping a food diary since the 12th, and also keeping track of pain levels, and any treatments I do for headaches, keeping track of meds I’m taking and when, and anything else that seems to contribute to my migraines (such as using the phone when it’s got white noise on the line, like I had to this morning when I called the landlady about our neighbor, and like last night when I had a quick phone call to make)… I notice if there isn’t static or other noise on t he line I can talk without it giving me too much of a headache, but if there is any noise on the line besides the person I’m talking to I’m prone to start having headaches. I have 3 foods I currently suspect for linking to this migraine. First is hotdogs, primarily because my pain shot back up not long after I finished having left over mac & cheese with hot dogs in it awhile ago, and we had that for dinner last night too, nausea started a couple of hours later. I had been craving corndogs about a week and a half ago…. and looking back at my diary/journal I had pretty much constant headaches (though not generally migraines) while eating those frequently. So that helps with my suspicion. The hotdogs are also a different (and cheaper) brand than the corndogs we buy (we’re corndog snobs … at least as far as what you can buy at walmart lol… they need to be one of two brands, the names of which I can’t think of… but they are the more expensive ones as the cheapies are gross…. hotdogs we’ll go cheap with though)… so that could be the cause of why hotdogs give me migraines, whereas corndogs just give me nasty (constant) headaches. My next suspect is Beef… which I’ve been trying not to eat as much of anyway. I have been having hamburgers again lately, so it’s been in my system more again. The third (and most sad) is chocolate. I still haven’t worked out what the link is there. I do know that I had been doing fine with small amounts of chocolate, but yesterday I had a bit bigger piece, and a different kind than I’d been having, and I”m having a migraine again. I think though, that it’s a coincidence with the chocolate and my headaches since I don’t always get a headache, let alone a migraine after eating it… but if I’m going into a migraine I crave it (and do pretty well not having it at that point, yesterday I wasn’t craving it, I just decided to try a piece again after not having any for a few days)… so we shall see… I’m continuing this food journal thing. Another thing to note is that this is the first migraine I’ve had since I started bleeding with the miscarriage…. I don’t know if that is linked or not… I know hormones were definitely causing some of the issues, so it could be. :/

As if enough weren’t happening in my body with the miscarriage, I just woke up from 4 hours of sleep a bit ago, and am having migraine symptoms….. I may be around even less the next couple days if I’m right about the migraine coming on. I’m off to go get some caffeine and hopefully break the cycle before it gets bad…

Ok… sometimes the treatment is almost as bad as the problem.

I’m back at my computer, and a few days earlier than I expected to be able to be.

I’ve been in a migraine cycle again. I slept a lot for a couple days, and yesterday the pain hit… I’ve got to say it ranks in my top three worst migraines ever. I spread out on the couch for quite a bit of my awake time yesterday (which wasn’t as long as normal), then went to bed. I tried to sleep but couldn’t, there was just way too much pain. I drank half of a can of coke (or so, it might have been closer to 3/4), then left the rest for Johnny. I then took some meds to calm my stomach, and went to sleep. It was a disturbed sleep due to the caffeine (part of the reason for the stomach meds was to knock me out, part was to stop the near vomiting I was dealing with) but I slept until around 2:30 (am), got up for around an hour, ate, took pain meds, talked to a friend for a bit, found out about a home remedy she uses (a hot green tea soaked washcloth across the forehead), got that prepared, and went to bed. When Johnny woke me up after he got home he had Excedrin Migraine for me (I’d asked for it). He made food and I took it and knew the risks. I don’t do well with caffeine. I’d slept about 12 hours by this time (in the 15 hours or so leading up to this point) and wanted some more, but knew I was unlikely to get any. When Johnny went to bed I went too, and tried to sleep, but ended up just getting back out of bed feeling like something was trying to crawl out of my body. I don’t even know how to describe how I feel when I have a lot of caffeine in my system. It’s like there is another being inside trying to move around, and then there is me, who just wants to lay still. And the stomach issues that happen to both ends with that sort of thing. My head pain is gone, but between the jitters, the hyperness, the weirdness and the tummy upsetness I think I’ll be sticking with dealing with the migraines the way I have been rather than taking this med, unless it reaches the point where I’m considering ER. Especially since it gives all those side effects and only gets rid of the pain (which admittedly helps me function better) but leaves all the other migraine symptoms. Such as… cognitive issues… it’s taken me over 4 (possibly over 5) hours now to write this.
Some samples of my facebook statuses over the course of the last few hours:
“Jenny feels like Tigger *bounce* *bounce* *bounce* …. Ummm yah… caffeine affects more than just my tummy. I’m still really lethargic and tired, but my body wants to MOOOOOOOOOOVE! LOL!
5 hours ago Custom: loading…”
“Jenny is pleased that the Excedrin has taken away the head pain.. not so pleased about the other pains and upsetnesses it’s causing, though with that much caffeine she knew to expect the issues…. and not pleased that the rest of her migraine symptoms are still around …. *bounce* *bounce* *bounce*… oh yah… and she’s hyper!”

A general headache/migraine update. Since going off of the hormones/birth control and the med I was on for my Raynaud’s (the med that made it so I needed to go onto the birth control) my headaches and migraines have been less frequent. However, they have also been more severe when they happen. I now spend one to two days sleeping in the process of prepping for the migraine, two to three days with intense pain, and one to two days sleeping a lot in the process of recovering from the migraine, so I’m almost constantly in one phase or another of migraines, it’s just not always the pain. Obviously the hormones were part of the issue if I’m not in constant pain anymore, but the lupus does seem to be part of the problem. Also I noticed the other night when I had a bad headache start (I managed to keep it at just a bad pain level rather than a full on migraine) that it started not long after a mug of hot cocoa, and that the migraine that started yesterday (and got severe fast) was after a few squares of a Madagascar chocolate bar, and a couple (smaller) squares of a mint chocolate bar from another brand. Both have decent percentages of real cocoa in them too. So I’m beginning to think chocolate, even if not the only cause, contributes to my migraines. I’m keeping a food diary now, and tracking my pain levels throughout the day as well.

So about two weeks ago my period started through my birth control, not surprising to me (other than not expecting it right then)…. birth control never works continuously for me for long it would seem. I called my general doc and explained what was going on with the migraines and the period and the birth control, and that I thought it would be good to change birth controls since I can’t really go off of them at this point with my other meds. He and I discussed for awhile and decided to try the Nuva Ring. I missed a call from him later that day as I was in bed, apparently he called to tell me he was not comfortable with prescribing a birth control of any sort with the migraines in the mix, especially since he doesn’t know that much about lupus or endometriosis. I again missed a call on Monday, so I just talked to them Wednesday when we were there (at the clinic) for E. There is an OB/Gyn he and E’s doc have been wanting me to see since the second miscarriage, but I put it off since we weren’t going to be trying for at least a few months, and there just wasn’t money at that point. This changes things. They really want me to go see that gyn. Part of my problem is that I can’t find a website, or any info beyond an address and phone number and patient reviews (no comments, just star ratings) for the guy. With my h ealth issues, and especially since this doc would be treating my endo, infertility and other issues of the gynecological variety, as well as having to coordinate with two other doctors, this doesn’t make me comfortable. When I was looking into possibly having surgery almost two years ago I researched doctors in the area, and found a ob/gyn group that has a couple doctors who specialize in laparoscopic surgeries, infertility/family planning/fertility issues, and high risk pregnancies. I feel this would be a better group for me to go to. I would like to follow my general doctor’s recommendations, but especially with his not knowing much about my illnesses, and how many docs I’ve gone through with the endo, I feel much more comfortable knowing ahead of time that the doctor is at least familiar with everything, if not dealing with it frequently (and since this office has two different doctors who specialize in minimally invasive and laparoscopic surgeries I’m going to guess they are the go to docs in the area, though obviously we want to meet them before I say “this is the doctor” for treating any of this). I’m not against meeting with the Gyn my doctor wants to send me to, but I want to see if there is a reason for that one in specific. If not, I want to go see one of the doctors at this other group.
I’m also hoping to go off a couple of my meds soon, as one isn’t doing much of anything and is a higher risk for pregnancy, and the other is birth control, which could be related to my migraines and I just prefer not to add that crap into my system any longer than I have to. But like I’ve said before, I want to be on birth control whenever I’m on that other med. For reasons I won’t go into (mostly on my end…) abstinence isn’t really much of an option for us. Well, at least not if I’m off the birth control pills LOL! And do to my “girly bits” issues (vulvodynia and/or vulvar vestibulitis as well as interstitial cystitis, and both of us being latex sensitive) most other forms of birth control are out. I’m just way too sensitive, and even E gets discomfort from most other types of birth control. I have to use special lubes for goodness sake…. so yah. Pretty much if I’m off birth control there isn’t much in the way of stopping a pregnancy (at least not short term or nonpermanent ones). That’s probably part of why my PCP wants me to go to an OB/GYN… because I’m pretty frakking complicated!!!!!!!
So this morning I called up to the clinic that handles our primary care and left a message for my PCP about possibly going to one of the OBs at that group instead of the one he and E’s doc recommended. I’m hoping to hear back tomorrow, since that’s when the nurse said she’d be able to get back to me… at the earliest. And I’m still waiting to hear back from my rheumatologist’s office on a couple of things… but I won’t likely hear back from them until next week now, because of the fact that my rheum only is there two days a week, and those days changed to Tuesday and Wednesday. GRR! So I ordered a new pack of birth control and pick it up later today as I’m on the last couple in my current pack. And hope that I can get at least partway through it by the time my doctor pulls me off the meds, though at least prescriptions are cheap with E’s insurance (the only thing that is).
And that’s my latest news, I am adding another doctor to my list. Hopefully the last one for now (and for at least a few years?)….